Health

Some of you may recognize the title of this post as part of a quote from Winston Churchill:

“Now this is not the end. It is not even the beginning of the end. But it is, perhaps, the end of the beginning.”

Although Sir Winston was talking about the Battle of Egypt, the same could be said of Obamacare today. Since this is a holiday week, there is a good chance that you missed the announcement from the Treasury department on Tuesday afternoon. The Obama administration unilaterally decided to delay implementation of the employer mandate part of the law until 2015. Never mind that this is another example of a President who repeatedly decides which laws he’ll enforce (in direct contravention to the Constitution). That’s a another post for another day. No, this is yet another example of what was supposed to be the greatest thing since sliced bread is actually what a whole bunch of us realized it was from the beginning: in military parlance, a BOHICA SNAFU. (For those of you unfamiliar with military terms, this is a family blog. Feel free to use a certain search engine to look it up).

How bad has this been? There are bad laws and there are poorly executed laws. But this law was less about the stated intention (revamping the American healthcare system to provide easier access, with lower costs, for all Americans) than it was about a political power play between the two major parties. The result was a poorly conceived law, rammed through an indifferent Congress by a power-hungry administration, crammed full of pork and incapable of actually working. Every day seems to bear out the fact that nobody read the ACA before the final vote (even if they had, it would have taken a year more just to figure out the details).

To date, there have been 10 instances where the Obama administration has been forced to admit defeat on a particular program in the ACA. The reversal on the employer mandate is the latest, and one of the most critical. The reason they gave, that businesses needed more time to figure out the paperwork, is as believable as the tooth fairy. The real reason is that businesses already figured out how to avoid the paperwork completely: keep workers under the 30 hour limit which would trigger the mandate. Friday’s jobs report, which showed that more part-time jobs were created than full-time jobs, underscored this.

Score one for those of us who warned that Obamacare was an economy killer.

Unfortunately for the American worker, the individual mandate is still in place. The removal of the employer mandate means that some 36% of Americans are now going to be forced into purchasing private medical insurance. The employer mandate proved politically unworkable in practice, I suspect that by October (when everyone needs to start shopping) the individual mandate will prove even more politically impractical.

By the way, here are the 9 previous ACA failures:

The CLASS Act: a long-term care insurance program that died last year. The reason? The law, as written, couldn’t be funded. The supposed budget savings amounted to 40% of the total deficit reduction attributed to the ACA.

Federally mandated insurance exchanges: States were given literally unlimited funds to set up insurance exchanges that would allow uninsured folks to shop for coverage. The problem is that only 17 states have bothered with setting up the exchanges and the law requires HHS to set up exchanges for any state that doesn’t. But the ACA failed to foresee that states might not want to bother with the regulatory and administrative nightmares in trying to create a health care exchange and provided zero funds. HHS estimates it will cost at least $1.5 billion dollars to get the exchanges up and running. Good luck with that.

Small business exchanges: along the lines of the individual exchanges, these were intended to allow small business employees to access the same rates enjoyed by employees at major corporations. They aren’t dead yet – but like the employer mandate, they have been delayed until 2015. The problem isn’t political here, though – it’s a real-world issue. Namely, how do you get the same actuarial certainty for an employee at a company with 10 employees as one who works with 1,000 other people? (Trick question: you can’t do it. But remember, the math geniuses in Congress who dreamed this up also raise government spending, then call it a “budget cut.”)

1099 reporting: This was a major funding tool for the ACA that was scuttled because it amounted to both a new tax and a reporting headache for every employer in the country.

The Great Waiver Debacle: a provision in the ACA allowed HHS to issue waivers to organizations that could prove they needed them. Lo and behold, the Political Patronage and Payback Machine kicked into high gear. Over 1200 waivers have been granted (nobody knows for sure, because HHS stopped reporting the numbers a few months back). But if you gave to the Obama campaign or the DSCC, it looks as if you got a waiver. Funny how a law that was supposed to benefit everyone has proven so incredibly unpopular in core Democratic Party constituencies.

The Pre-Existing Plans: great idea, on paper. Anyone who has a preexisting condition knows how difficult it is to find medical insurance. But once again those Congressional mathematicians didn’t realize how much it would cost to insure everyone – and the program has already run out of money. No more people are being accepted, even though HHS estimates that only 30% of those eligible are covered.

Children Only Plans: under the ACA, if an insurance company sells child-only healthcare plans they need to offer coverage to kids with preexisting conditions. Somebody forgot to tell Congressional Dems the way the marketplace works (that companies do not willingly increase costs without some future benefit). The child only plans have virtually disappeared from the marketplace, a casualty of Obamacare.

The “Basic Health Care Plan”: What’s that you say? You’re in perfect health, you’re young and you really don’t want to pay for full coverage that you can’t afford, even with the promised subsidies? Well, not to worry: the ACA mandated that states offer a basic plan – or essentially, catastrophic coverage-only. Except, as with the other mandates, it has proven unworkable and pushed back to 2015.

“If you like it, you can keep it”: I saved the best for last! The greatest example of marketing hucksterism exhibited by the Obama administration was the President’s repeated assurances that if you liked you current health coverage, you would get to keep it after the ACA was passed. It’s pretty clear at this point that either the President is as dumb as rock when it comes to market economics or a bald-faced liar, because millions of Americans no longer have the health insurance options they had 4 years ago. Heck, HHS expects that some 126 million Americans will see a “significant” change to their health coverage as a result of the ACA.

The administration and Congressional Dems keep telling us that we’ll love Obamacare once it fully takes effect. They insist the law’s problems have more to do with poor marketing and Republican obstructionism than any basic flaws. But the record on implementation has more failures than successes and the law keeps proving to be more and more unpopular across all demographics.

Here’s a suggestion for the President. Admit that the latest reversal is, in fact, proof that the ACA is a disaster. Politically, it swept your party out of power in 2010 and is threatening to reinforce those losses in 2014. If you are truly interested in your legacy, which seems to be the general consensus among the DC elite, then do something no President has done.

Declare that your “signature accomplishment” is failing to deliver on the promises it made. Ask Congress to repeal it, scrap it and consign it to the dust heap of history. Ask Congress to work together to craft a healthcare reform package that actually works to improve delivery and reduce costs. In short, take ownership and command the respect true leadership creates.

This is the beginning of the end. The only question at this point is whether the President can rewrite the script and create a happy ending. If the past 5 years are any indication, he is politically incapable and (more importantly) personally unable to do so – and the nation will suffer as a result.

You may not have seen this (it certainly isn’t getting any play in mass media), but apparently the President thinks issuing an executive order will fix what ails the Veteran’s Administration’s approach to mental health issues. Or maybe it’s a cheap ploy for votes…nah, no politician would stoop that low, would they? The funny thing is, the 24 hour standard he’s ordering is actually worse than existing VA guidelines – and which the IG notes the VA meets less than 50% of the time.

I’ve read today – far too often today – that Chief Justice of the United States Supreme Court John Roberts is a cross between Judas Iscariot, Pontius Pilate and Benedict Arnold. Or maybe something worse. Although I doubt Chief Justice Roberts needs me to come to his defense (or that he even cares, to be honest), I’m going to give it a shot. Let’s look into what the Supreme Court ruling on the PPACA actually means before passing judgement, shall we?

The Supreme Court ruled that the government cannot compel anyone to buy anything. Ever.

Big? You bet this is huge. We’ve heard for two years from academicians and progressives that under the Commerce Clause, Congress has the ability to force us to buy stuff. Their theory was that because everyone needs health care at some point, we all engage in commerce related to the health industry and the very act of not purchasing health insurance was an action. Well, not so fast.

“The individual mandate, however, does not regulate existing commercial activity. It instead compels individuals to become active in commerce by purchasing a product, on the ground that their failure to do so affects interstate commerce. Construing the Commerce Clause to permit Congress to regulate individuals precisely because they are doing nothing would open a new and potentially vast domain to congressional authority…The Framers gave Congress the power to regulate commerce, not to compel it, and for over 200 years both our decisions and Congress’s actions have reflected this understanding. There is no reason to depart from that understanding now.”

So, the Obama administration’s argument (echoed by the same academicians above) got the royal smack-down. Chief Justice Roberts may as well have wrote, “What are you, a bunch of moe-rons?”. The result is the same. Rarely does a published opinion go this far (nearly 16 pages) to explain why an argument is so plainly stupid.

The Supreme Court ruled that ObamaCare is the biggest tax hike in US history.

Yes, they ruled the PPACA can move forward, but that the government can no longer try and hide behind the facade of an individual mandate. No, they ruled: ObamaCare is actually a tax increase. Or more precisely, a combination of 21 different tax increases that total $1.2 trillion in new revenue annually. How big is that? It amounts to new taxes that consume 8% of the nation’s economic output. With only a little over 4 months until the election, I’m not sure how either the President or his minions in Congress feel about running for election on a platform of delivering the biggest tax increase in history. I doubt they’re relishing the chance to find out. Already the cries are being raised about the impending sequestration, with it’s 1.5% tax increase and strong possibility of pulling the economy back into recession. ObamaCare represents a tax increase more than 5 times that impact. By ruling as they did, the Court hand-delivered a gift-wrapped campaign theme for the Republicans this Fall. “If you thought the economy was bad before, just wait until ObamaCare sinks it forever.”

States cannot be forced to participate in ObamaCare.

A big part of how ObamaCare delivers affordable insurance to the masses is through a massive expansion in Medicaid, by enrolling anyone at 133% of the federal poverty line or below in the program. A big part of how the administration covers up the cost of that expansion is by removing federal subsidies for it by 2017, but still compelling the states to pick up the tab. As of right now, 13 states are balking at the idea of pushing their budgets into the red to make good on this mandate. The Supremes issued another smack-down on this, ruling that unfunded mandates are unconstitutional, even if the mandate is to an existing program.

“It is enough for today that wherever that line may be, this statute is surely beyond it. Congress may not simply “conscript state [agencies] into the national bureaucratic army,” and that is what it is attempting to do with the Medicaid expansion.”

Either the administration can relent and pick up the entire tab for the Medicaid expansion, or live with fact that the original goal of covering more than 95% of Americans in some form of health plan is by the boards.

So, is this really a win for Team Obama? Only in Pyrrhic sense. Yes, the PPACA stands for now – but not all of it. The Medicaid smack-down means that a very large part of the administration’s base of support won’t see any benefit from the law. As for the rest of it, Team Obama is now left to campaign on the largest tax hike in history, in the middle of the worst economy in 80 years. It is also already galvanizing support for the Republican challenger as nothing else could have – especially given Mr. Romney’s own dubious record on health reform.

The President may be heading to bed this evening with a smile on his face. But I bet the one on the Chief Justice’s face come November 6th will be a bit bigger.

The Supreme Court issued their ruling on the Patient Protection and Affordability Care Act earlier this morning. The short story is, the act stands. But there is much in the ruling that I can see making the President and entire Federal government wishing they had never taken this up to begin with.

For staters, the Individual Mandate is completely unconstitutional. No ifs, ands, or buts.

“Construing the Commerce Clause to permit Congress to regulate individuals precisely because they are doing nothing would open a new and potentially vast domain to congressional authority. Congress already possesses expansive power to regulate what people do. Upholding the Affordable Care Act under the Commerce Clause would give Congress the same license to regulate what people do not do. The Framers knew the difference between doing something and doing nothing. They gave Congress the power to regulate commerce, not to compel it. Ignoring that distinction would undermine the principle that the Federal Government is a government of limited and enumerated powers. The individual mandate thus cannot be sustained under Congress’s power to “regulate Commerce.'”

Instead, the Court ruled that Congress can impose a “health tax” as part of the individual tax code, but again, it cannot apply a penalty to persons who refuse to participate in the insurance market. They can only impose the tax uniformly – on everyone – and then refund or credit people who do buy insurance.

But the biggest bombshell coming from this ruling is the Court’s take on unfunded federal mandates. They’ve basically eviscerated one of Washington’s favorite ploys – requiring the states to do something, but not paying for it. In this instance, it is the expansion of Medicaid to cover all persons up to 133% of the federal poverty line. Although Congress offers short-term relief for the increased expenditure, that ends in 2017 and the states eventually pick up most of the tab – or face losing all of their federal funding for Medicaid. The Court ruled that if the Feds want to expand Medicaid that way, they need to pick up the full tab – permanently.

“The Medicaid expansion thus violates the Constitution by threatening States with the loss of their existing Medicaid funding if they decline to comply with the expansion. The constitutional violation is fully remedied by precluding the Secretary from applying §1396c to withdraw existing Medicaid funds for failure to comply with the requirements set out in the expansion.”

Taken broadly, this opens a Pandora’s box of mandates to legal challenges, in everything from education (“No Child Left Behind”) to transportation (Federal Highway Funding). Fun times lie ahead, I’m sure.

I’ll have more in a few days, once I’ve fully digested all 193 pages of the decision. If interested, you can read the full thing here.

Undoubtedly, most of you have heard about Love Canal, NY. But what would you say if I told you there was a place where contamination levels were worse, with a population 500 times greater? And what would you say if that place was owned by your government? And that while acknowledging the contamination since 1984, the government has done nothing in the intervening 28 years to assist those affected by it?

This is the situation for the more than 1 million Marines and sailors who served aboard Camp Lejeune, NC between 1957 and 1987. During that time, the wells used for drinking water at the base were contaminated by more than 200 known toxic substances. Nobody can say with any certainty what the effects of ingesting this many poisons, in the volumes and combinations by anyone who lived on the base for any length of time, might be. What is known that there has been a rash of strange diseases in people who lived and worked on the base: male breast cancers, digestive diseases and cancers, brain diseases and cancers. While they cannot be 100% conclusively linked to the contaminated wells and ground water, the unusual rate of incidence of these diseases certainly suggests more than a casual causal probability. In some cases, the incidences are more than 1000x what is found in the general population!

But the government understands that actually taking care of the men, women and children who ingested these chemicals is an expensive proposition. And so, rather than live up to the Marine Corps motto of “Semper Fidelis,” your government has seen fit to lie, obfuscate and deny assistance to them. Rather than display faith and fidelity to the Marines who were assigned to duty at Camp Lejeune, the government has decided it better suits their needs to shun us and pray we all die off before they need to do anything. The Obama administration has decided that rather than lend a hand, more study is required. Congress has allowed legislation aimed at helping languish in committee, despite having bipartisan support and 42 co-sponsors.

There is something you can do to help, though. First, sign the petition to let the President and Congress know that you, the taxpayer and citizen, support the Marines fighting what may be the most desperate battle of our lives.

Second, the Janey Ensminger Act would classify any Marine or sailor, or their dependents, who lived at Lejuene as having a 100% service-connected disability. That would allow them to receive free, lifetime medical care through the Veteran’s Health Administration. As mentioned above, the bill is currently stuck in the Veterans Affairs Committee. The committee rules allow the committee chairman, Rep. Jeff Miller (R-FL 1), to pass the bill out of committee without a vote. So, write Rep. Miller and urge him to send the bill to the full House of Representatives for a vote. You can also message him through Facebook.

Let’s get it done, people. When duty calls, the Marines are the first to answer. Now it’s your turn to do the same for them.

I’m writing this with a heavy heart. Well, typing might be the better description. I hardly ever actually write anything any longer. And if I really wanted to be exact, I would say that I’m typing this on my smartphone.

30 years ago this would have been unimaginable. I wrote almost everything. Even when I typed something on my old Olivetti, I wrote it first – since making corrections on the fly was time consuming and rarely came out right, anyway. 30 years ago a handheld device that could do everything this smartphone can didn’t exist, not even on Star Trek. 30 years ago, if I needed to make a call away from home I had to find a public phone – and pray I had a dime in my pocket. 30 years ago, video recorders were the size of a car battery (and just as heavy) and portable music consisted of tinny sounding radios. 30 years ago, computers took up an entire room. The idea of having one in every room in my house, along with one I can fit in my pocket, was unimaginable.

Unimaginable, except to one man who had the vision of making personal computing a reality. Over the next three decades his vision would transform the way the world communicates, interacts and thinks. That innovative spark would not only change the world as a whole, but change the future of one geeky, 16 year old from a sleepy little town on the Jersey shore. The way Steve Jobs envisioned the way the world could work fired my imagination and led me into a career in tech.

So, you’ll pardon me if I occassionally break into tears over the next day or so. When Mr. Jobs passed away earlier this evening, the world may have lost the greatest technologist since Thomas Edison. But I lost a hero.

I came across an article from Catherine Hinton that just may be the best description of the pain from which Crohn’s Disease patients suffer. I usually compare it to being in labor, but not being a member of the fairer sex I’ve relied on descriptions of that pain from my wife (and others).

Catherine begins her description this way:

“If you have Crohn’s Disease you are familiar with pain. Not just a ‘pain’, but the whole repertoire of pain sensations that the human body can manufacture. Sometimes you might be treated to a solo rendition that can be quietened down with over the counter meds, but more often than not Crohn’s pulls out all the stops and decides to delight you with a symphony performance that inclues the equivalent of timpani drums and death metal guitars. You might think that the pain is limited to bowels (it is after all Inflammatory Bowel Disease) but oh no, if Crohn’s can drag in other parts of the body, it will!“

I highly suggest you hit the link above and read the rest of her description, then share it with your friends and family. It’s both funny and highly accurate!

As a long time Crohn’s patient, I am often sought out for advice on handling the disease by newly diagnosed patients and their families. And while awareness of Crohn’s is much greater than it was twenty years ago, most people really don’t understand much about the disease or the way it impacts a patient’s life. So I’ve decided to write a four-part document that hopefully explains to new Crohn’s patients and the general public what to expect and how to cope. These posts cover the medical symptoms tips for patients living with the disease and tips for people who know someone living with Crohn’s.

In this post, I’ll cover symptoms.

Crohn’s Disease is, without a doubt, one of the more debilitating medical conditions around right now. For those unfamiliar with it, Crohn’s is an auto-immune disorder that affects the digestive tract. Symptoms include weight loss, frequent (and often uncontrollable) bowel movements, diarrhea, nausea, bloating, intestinal discomfort and pain (which can mimic appendicitis) and fatigue. Symptoms also include the typical aches, pains and fevers usually associated with the flu. Because it is an auto-immune disease, people with Crohn’s often find themselves later developing other auto-immune disorders – for instance, I have rheumatoid arthritis and developed hay fever about 7 years ago. I’ve met other patients who developed even more severe types of auto-immune disorders, such as lupus.

Very little is really understood about Crohn’s. Nobody knows why it occurs – there seems to be a genetic factor (an extra gene is found in about 90% of Crohn’s patients), but nothing has been completely ruled out. Ethnicity, diet and activities all may be related – or maybe not. Likewise, there isn’t a cure. What has advanced since I was first diagnosed 20 years ago is understanding how the disease functions and causes other functions of the body to stop. That has led to better treatment options and generally, a better quality of life for those of us affected. Once, the disease was thought more prevalent in women than men, but the rates of affliction, once adjusted for populations, are actually about the same. Almost every ethnic group is affected, although peoples of Asian and African descent have lower incidence rates than Caucasians.

Odds are if you’re a new patient, then you are in the 16-25 year old range: this is when about 80% of new cases are first diagnosed. (I was 6 weeks shy of my 26th birthday when first diagnosed). That being said, new cases are diagnosed in every age group. Since I’ve no personal experience with pediatric Crohn’s, I won’t pretend to offer advice for anyone looking for information about Crohn’s and young children.

Symptomatically, Crohn’s is similar to Ulcerative Colitis. The similarities often confuse a person only cursorily aware of both conditions, which often leads to them confusing the two. I’ve had past co-workers and current friends often assume that because Crohn’s and UC are related and so similar symptomatically, that they are the same. But when I’ve had severe flare-ups of the disease, they are often shocked when they come visit and find me hooked up to dozens of tubes and wires, all needed to keep me alive and stable.

The symptoms are where the similarities end. Both cause ulcerations (inflamed areas) to appear in the colon, but the ones from Crohn’s disease burrow deeper into the tissue and can appear anywhere in the digestive tract. In my particular case, the upper palate, gums, a section of the small intestine called the duodenum and another called the ileum are affected in addition to two spots in my large intestine and another in my colon. Another big difference: in severe cases of colitis, a type of surgery called an ostomy can be performed, curing the disease (although at a high price). For some severe cases of Crohn’s usually where the tissue is badly damaged), surgery is also done – but removing the affected areas doesn’t cure the disease. It will reappear in another area of the GI tract.

Since Crohn’s patients generally have difficulty digesting food, it isn’t uncommon to find them malnourished even when relatively symptom free (by the way, those of us in the Crohn’s community generally refer to these periods as being in remission). Unfortunately, the type of malnutrition can vary from patient to patient. The reason is because so many different parts of the digestive tract are affected and each part is responsible for processing different nutrients. Regardless, the malnutrition is a major contributor to all types of related problems. Since each part of the body relies on the digestive system to function properly, people with Crohn’s often suffer from other system breakdowns. Their hair, skin and nails can become dry and brittle; they may suffer anemia, dehydration, high blood pressure, osteoporosis – the list includes virtually every other organ in the body. Add in the side-effects from long-term use of some of the more common medications used to treat Crohn’s, and the results can be even more system breakdowns. For example, the use of Mesalamine drugs can lead to excessive (and particularly foul smelling gas). As for myself, repeated exposure to very high doses of corticosteroids has resulted in cataracts and osteopenia (the precursor to osteoporosis). The calcium deficiency from my Crohn’s along a Crohn’s inflammation in my upper palate and the drug cocktail I’m on, resulted in my losing all of my teeth before I was 30 (although, my dentures look damn good!).

As a long time Crohn’s patient, I am often sought out for advice on handling the disease by newly diagnosed patients and their families. And while awareness of Crohn’s is much greater than it was twenty years ago, most people really don’t understand much about the disease or the way it impacts a patient’s life. So I’ve decided to write a four-part document that hopefully explains to new Crohn’s patients and the general public what to expect and how to cope. These posts cover the medical symptoms tips for patients living with the disease and tips for people who know someone living with Crohn’s.

In this post, I’ll cover what living with Crohn’s is like.

Once diagnosed with Crohn’s Disease, odds are your doctor gave you some version of “you’re going to need to make some changes.” They probably prescribed a bunch of new medications and told you that you’ll need to take them for the rest of your life. You were told that you’ll need to make some changes to what you eat and what you drink. Since the odds are you’re still young, you’re probably feeling as if life is essentially over. That’s normal, but as I and millions of other “Chronies” can tell you – life isn’t over. It just got more interesting. If you haven’t read through the posts on symptoms and treatments yet, take a few minutes and do so now. One of your best weapons in the fight against Crohn’s disease is education and this is good place to start. I also suggest going through the Crohn’s & Colitis Foundation’s website. It is an invaluable source for information.

Your first major change is that you and your doctors are about to become fast friends. Before my diagnosis, I didn’t have a regular doctor. I was a typical, healthy 25 year old and only went to see one if there was something really wrong – and it had to be really wrong before anyone could force me to step foot into a doctor’s office. The gastroenterologist who diagnosed me was as strange to me as an alien who dropped in from Mars. He was a nice enough guy, but I didn’t particularly like him and because of that, wasn’t sure I should how far I should trust him. So rule #1 about living with Crohn’s: find two doctors that you not only like but can absolutely trust with your life: a gastroenterologist (for your guts) and a general practitioner (for everything else). Because how you handle those relationships will go a long way in determining how well you live your life. In my case, I’ve had the same primary care physician for 10 years now and GI doctor for 8. The reason is not only are they very good doctors, but we have a great relationship. They know me by sight, including my medical history. How well? About three years ago, I had my left knee rebuilt and was in the hospital for the pre-op when my GI doctor was racing down the hall past my room. When she spotted me lying in bed, she put on the brakes, turned around and walked into my room – concerned I was having a flare. Then she made sure my chart mentioned my Crohn’s and that I’m allergic to tetracycline before continuing on to where she was headed. That type of relationship with your doctor is crucial to not only living with Crohn’s, but living well. Besides the peace of mind you get from that type of relationship, it has practical implications. When Cimzia was first approved for use, my GI doctor called me with the news and asked if I was interested in trying it. Had I waited for my scheduled appointment, I would have waited another four months before beginning treatment.

That brings up my next point: make certain you keep all of your medical appointments. Things come up that we never expect in our lives, but it is critical that seeing your doctor regularly. Even if you’re feeling well, your doctor may spot something and be able to put out the fire before it begins. Make certain you take all of your medications as prescribed. There’s a good chance some of them will need to be taken multiple times a day (mine do). A tip: nowadays, almost everyone carries a cell phone. And many of us carry a smartphone. A great way to remind yourself to take your meds is to set reminders on your phone. In many cases, you can synch those reminders with your computer, too.

It’s also important to have a good support network, other than the medical professionals. Friends and family are going to be important as you live with Crohn’s. Some of the people you consider friends won’t want to be bothered with helping out when you’re having a flare – it’s actually a fringe benefit to Crohn’s. You’ll find out who your real friends are and who was just a hanger on. Part of the reason is mental. Nobody may have told you this (although you might have suspected), but living with Crohn’s can have some very down moments. You need to mentally prepare yourself for frequent hospital stays and often feeling like – pardon the pun – crap. There are times when you will be so physically ill you can’t leave the house; having a friend or family member willing to run errands during those times is invaluable. Depressed feelings go hand-in-hand with so often being unable to do much more than run to the bathroom, with the frequent hospitalizations and being isolated. Having friends who are willing to drop by, make hospital visits and just generally keep your spirits up is more valuable than having a million dollars in the bank.

I also suggest finding a Crohn’s patient network, or if you’re ambitious starting one yourself. There are a lot of us Chronies out there – probably more than you imagined. Nobody has an exact count, but it’s estimated that as many as 43,000 people in the United States have Crohn’s. There are also on-line support groups available, such as the Crohn’s Disease Support Network, MD Junction and Daily Strength. Why join a support group? Because while having friends and family is important, it’s also important to be able to discuss how Crohn’s is affecting your life with other people who have experienced exactly what you’re going through. If you’re reading this, chances are you want to find out more from someone who’s been there and done that. Support groups offer that and more.

IF you’ve read this far, you are almost certainly wondering what in the world you did to deserve this. After all, all I’ve written about is that you can expect pain, hospital stays, frequent bathroom trips and finding people to talk to. None of that stuff is fun and you’re probably saying to yourself, “My life is OVER!” Well, now for the good news: your life is hardly over. You’ll need to make some changes, sure, but consider them course corrections. Having Crohn’s doesn’t preclude you from living a full, happy and productive life. If I’m not proof enough of that, Wikipedia has a list of some pretty famous people who also have Crohn’s Disease – and it includes athletes, actors, musicians, politicians and others. The steps I’ve outlined above are just preparatory to living the life you want. Here’s some common, everyday hints and tips for not only surviving but thriving with Crohn’s:

Work

While it’s true that some Crohn’s patients are permanently disabled, the vast majority of us work for a living. And most of our employers are glad to have us, even if it means having to make a few accommodations to allow us to work. The key is to make certain you let your employer know that you have Crohn’s Disease ahead of time. I obviously haven’t held the same job for the past 20 years (who has, nowadays?) and one of my keys to finding productive employment is to always let prospective employers know I have Crohn’s. I may have lost a few jobs because prospective employers didn’t want to bother with it, but I’ve always looked at it as their loss. Your co-workers will understand the reason you take a few extra bathroom breaks during the day, pop pills at odd times and are occasionally late arriving.

Eating Out

Eating out can pose a special challenge for Crohn’s patients. Rule #1 about eating out: avoid fast food. While McDonald’s, Taco Bell, Wendy’s and Burger King are cheap, quick and tasty dining alternatives they play havoc with our insides. They’re just as fast coming out as going in. Like everything related to our diets, you can’t necessarily rule them out forever. But it should be on your “last alternative” list. Rule #2: be proactive about asking how food is prepared and what ingredients are in a dish. I made the terrible mistake of not asking several weeks ago and paid for it for two days. Remember, it’s your health and your right to know what you’re eating. I’ve yet to find a restaurant that isn’t willing to tell me.

Along with eating out is drinking. Again, this is the “anything in moderation” meme. If your friends are going out to get hammered, volunteer to be the designated driver. If you’re having a beer after work with a couple of buddies, listen to your gut. If your symptomatic, it’s probably best to have a glass of water (or ginger ale) instead. If you’re otherwise healthy, one or two drinks is probably ok. But more than that and you will be asking for trouble. And if you’re drinking anything alcoholic, eat something – it helps slow the absorption of alcohol and your stomach will thank you. Trust me on this one – a hangover with Crohn’s is twice as bad as any you ever had without it.

Traveling

There might be no greater horror for a Chronie than being on the road and needing to find a bathroom – NOW – and not being able to find oneThis has happened to everyone with Crohn’s; you’re not alone in this experience. But there are a few tips that can reduce the chances of it happening. First, map your route and the public restrooms along the way. There are some great on-line resources for this, generally localized to your region. If you happen to have an iPhone or Blackberry, download the SitOrSquat app. It’s a terrific resource for finding a public toilet. (For the rest of us, you can text 368266 and get back a list of nearby bathrooms). Tip #2: check with your doctor if it’s ok to take an anti-diarrheal before heading out. If so, then go ahead and pop that Immodium® or Kaopectate®. Third, do your best to use a toilet before leaving.

Even doing all of this won’t prevent accidents from happening. They will, so it’s best to be prepared. I always carry an emergency pair of underwear in my briefcase, along with some baby wipes and one of those plastic bags you get from the grocery store. Most of my friends understand why my briefcase goes with me everywhere (even to the beach, although I don’t take it on the beach). Ladies, you can do the same with your purse.

Dating

Most of what I covered above applies to dating, as well. Your date will just need to be understanding if you need to excuse yourself from the table during dinner, or take a leave of absence during a movie. But one thing to note about Crohn’s is that stress can bring on symptoms – and dating can be a stressful event. As with work, let your date know ahead of time that you have Crohn’s. If they beg off or stand you up, well, then they definitely weren’t right for you, were they? Romantic situations can be difficult (after all, excusing yourself and running to the bathroom can ruin the mood), but you and your significant other will figure those out as you go along.

Starting a Family

One of the most important decisions a person ever makes is if and when to start a family. For a Crohn’s patient, the decision becomes even more difficult. I can’t tell you whether or not to have children, or when the time is right. I can only relate my personal experience and that I wouldn’t trade my three sons for all the tea in China. But things you definitely want to consider include the possibility of passing along Crohn’s (about 1 in 3 Cronies have a family member who suffers). You also need to take into account how well your Crohn’s is responding to treatment and how the additional stress of children may affect you. Finally, while all prospective patients need to take into account their financial situation, Crohn’s patients need to be especially mindful of the fact that as a result of their condition, they may face periods with reduced (or no) income.

Stress

Moderating your stress level is key to living well, either with Crohn’s or without. It’s just that for those of with Crohn’s, we need to pay a bit more attention to it than most people. If you perused that list of famed Cronies, then you’ll notice quite a few of them had stressful occupations. (Imagine the stress Dwight Eisenhower was under, first as the man tasked with defeating Hitler and later as President of the United States!). None of them could reach the pinnacles of their professions without learning to manager stress and the good news is you can, too. Whether it’s working out in a gym, running, prayer, meditation or something else, find it and practice it. For me, it’s a combination of prayer and working out. I work out at least three times a week and every morning starts off with a bible reading and prayer.

Outdoor Activities

If you’re anything like me, you probably enjoy being outdoors and doing things. And there’s absolutely no reason you can’t, even though you have Crohn’s. I played baseball until age and bad knees caught up to me, I’m still an avid bicyclist, I play golf and I still love taking hikes through the woods and spending time on the beach. If you enjoy the great outdoors, just follow the tips for traveling above and you should be fine. If you’re also into organized sports, most leagues are willing to grant you a “time-out” so you can use the restroom.

Ok, I think I covered most situations here. But if you have any other questions, feel free to drop me an email at rayrothfeldt@aol.com.

As a long time Crohn’s patient, I am often sought out for advice on handling the disease by newly diagnosed patients and their families. And while awareness of Crohn’s is much greater than it was twenty years ago, most people really don’t understand much about the disease or the way it impacts a patient’s life. So I’ve decided to write a four-part document that hopefully explains to new Crohn’s patients and the general public what to expect and how to cope. These posts cover the medical symptoms tips for patients living with the disease and tips for people who know someone living with Crohn’s.

In this post, I’ll cover some of the treatment options available and the improvements made since I was first diagnosed. But before deciding on a treatment or treatments, discuss all of these options with your doctor. You may want to read to read the section on symptoms before reading this post, so that you understand why certain treatments are used.

When I was first diagnosed in April 1991, there weren’t any truly effective treatments for Crohn’s Disease. The treatments were either drastic – an ostomy – or did their best to mask the symptoms . Medications included a form of sulfa, antibiotics, oral steroids and anti-diarrhea solutions. Since these medications rarely induced remission of the disease (that is, a significant reduction of symptoms), most of us with Crohn’s were hospitalized often. Between 1991 and 2000, I was hospitalized 18 times for Crohn’s or Crohn’s related symptoms. All told, I spent 318 days in a hospital bed during those ten years.

The principle reason treatments were so ineffective was that so little was understood about the disease or how it functions. Fortunately, great strides have been made over the past ten years. Thanks to the work of researchers, current treatments are much more effective. I’ll go through each of these.

Corticosteroids

Corticosteroids are artificial hormones often given to patients in during “flare-ups” (periods of extreme disease activity). During a flare, what happens is the tissue surrounding the disease inflames, causing the extreme pains for which Crohn’s is noted (I’ve joked that I know what labor pains must feel like – my wife actually agrees!). Corticosteroids such as Prednisone, Prednisolone and Deltasone work by reducing the inflammation. These drugs are artificial replacements for the corticosteroids generated by the human body, but are given in much higher doses than the body normally makes. I’ve received as much as 120mg of prednisone a day, or about 60x the body’s normal production. While they are as close to a miracle drug as any for ending flare-ups, they pose serious risks with extended or frequent use. The first is dependence; when receiving such massive doses the body stops producing its own. This is why they are usually prescribed for short periods and ramped down while prescribed. Prolonged use can also lead to cardiovascular disease, osteoarthritis and cataracts. Also, patients taking corticosteroids should note that weight gain and mood changes are common when taking them.

Sulfonamides

This type of medicine is used to help maintain remission. It’s been used since I was first diagnosed, but the delivery of the active ingredients in sulfonamides has improved greatly in that time – meaning lower and less frequent doses are needed for the same effect. The first medication I was prescribed was Sulfasalazine; I had to ingest three 600mg tablets 4 times a day. If you’re not interested in doing the math, I was taking 7200mg every day, without much positive effect. Today, I take 1200mg of Lialda daily. The most commonly prescribed sulfonamide for Crohn’s today is Asacol (or its generic equivalents, Mesalamine and 5-ASA ), usually at a 800mg dose three times daily. The side effects are relatively minor, such as excessive gas and bloating. In rare cases, it can exacerbate pre-existing heart and lung cases. And some studies link these drugs to reduced fertility in men.

Antibiotics

Everyone has bacteria lining their digestive tract. We actually need them to help with proper digestion. But during Crohn’s flare-ups, the bacterial populations literally explode. Nobody is quite sure why, or what the connection may be. Regardless, most gastroenterologists will prescribe one or more antibiotics during a flare-up. The most common is flagyl, given intravenously.

Anti-TNF medications

The first major advance was in understanding the role an antigen called tumor necrosis factor (or TNF) plays in Crohn’s and the use of anti-TNF drugs in fighting Crohn’s. TNF forms naturally within the body and is one of our immune system’s defense mechanisms against cancer. It works by inflaming the cells around the cancer cells, in essence choking them. Nobody is quite sure why Crohn’s patients suffer this type of inflammation, but studies in the mid and late 1990’s showed that anti-TNF drugs actually reduced the chronic tissue inflammation. Since then, drugs like Imuran or 6-Mercapturine (6-MP) have been introduced. They can’t actually induce remission, but they are effective in maintaining remission once it’s been achieved. The big downside is since they reduce the body’s principle anti-cancer agent, patients taking them are at much higher risk for developing cancers. Recent studies show the possibility that Crohn’s patients who have been on one of the anti-TNF medications for extended periods are at substantially higher risk for a type of leukemia.

Biologics (TNF-A inhibitors)

An offshoot of anti-TNF medications, biologics as used in Crohn’s treatment are designed to essentially “turn-off” the immune system. There are three currently in use: Remicade, Humira and Cimzia. Each has some unique side-effects; ask your doctor about them. In 1998, Remicade was the first of these drugs approved for use in Crohn’s, so it has the longest track record. However, it also has the most common allergic reactions and needs to be administered by IV over a course of several hours. Humira and Cimzia are similar to one another, but whereas a Cimzia injection can last 4 weeks, Humira needs to be injected every other week. Generally speaking, since the immune system is kept in a very depressed state while taking these, the patient is very susceptible to any airborne illness and contracting one can be deadly. If you are planning to take one of these, know the risks and make certain you discuss them with your doctor. I’ve been taking Cimzia for close to a year and it has made a HUGE difference in my quality of life.

Surgery

Crohn’s patients often require surgical procedures. These can range from the relatively benign (colonoscopy for examining the lower GI tract and removing polyps for closer examination) to a full-blown ostomy. Before undergoing any surgical procedure, make certain you discuss all of the implications with your GI doctor and meet the surgical team. You should also try to have a trusted friend or family member with you for these consultations – odds are if you’ve reached this point, the pain has also become nearly unbearable. Whether you’re fighting the pain au natural or with painkillers, you won’t be in the best command of your mental faculties.

Diet

For Crohn’s patients, diet is truly a four-letter word. We obviously need to eat, but many foods (including what can seem like most of the yummy ones) will cause an exacerbation of symptoms. Eat too many of them and you may wind up with a full-blown flare. Match that with the fact that as a Crohn’s patient, you need to ensure good nutrition even more so than most people and you stand a good chance of being baffled by your diet – or going insane J. Your best bet is to avoid foods that are hard to digest, such as nuts, popcorn and seeds. As for everything else, keep a log of everything you eat and if you experience increased symptoms, then avoid it in the future. Personally, I try not to exclude anything unless I’m in a flare – I just make certain my “avoidance” foods aren’t a constant part of my diet.

Also, you may want to consider nutritional supplements if you find you can’t get enough nutrients from eating. These can range from vitamin supplements to more robust liquid supplement shakes, like Ensure or Boost. In any case, working with a registered nutritionist is always a good idea. And one more thing: most Crohn’s patients find eating large meals tend to make them symptomatic. Try to eat smaller meals and eat more often. For instance, I typically eat 6 times a day – I cover this in more detail in the lifecyle adjustments post.

Alternative Medicines

There are quite a few alternative (or herbal) therapies out there for Crohn’s patients. I do not recommend any of them, although parts of them can be helpful. For instance, I find mint tea can help calm my stomach if I overdue it. Regardless, before trying any of them, be sure to check with your doctor and investigate them fully to find out how they can interact with your medications or each other. Just because they’re herbal or all-natural doesn’t mean they can’t have side-effects.

Ongoing Care

Perhaps the most important part of treatment is your ongoing care. Your doctor will likely send you for seemingly endless tests. CAT scans, GI studies, barium enemas, X-rays, colonoscopies, blood tests and more are part of the typical “Crohnie’s” regimen. Undergoing these and maintaining your relationship with your doctor are crucial in keeping Crohn’s at bay.